Huntington's Disease Awareness Month is upon us again! Each year the global Huntington's community unite during the month of May in a shared mission to raise awareness of this rare and little known disease.
COVID-19 social distancing measures and various building closures have unfortunately halted our annual #LightItUp4HD awareness campaign so, throughout the month of May we are asking as many people as possible to join us in 'speaking out' for Huntington's disease as part of our #SpeakOut4HD campaign.
We will be 'speaking out' to raise awareness of the struggles many people affected by the disease face including mental health, the complexity of caring, coping and loss.
We are also running a #Pledge4HD campaign in which you can raise awareness by pledging something special throughout May. It could be to share informative Huntington's related social posts during May. Or, you can pledge to run 2 miles a day for a week to raise funds. The possibilities are endless.
Find out more below about how you can get involved in Huntington's Disease Awareness Month 2020.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email firstname.lastname@example.org.
For the final week of awareness month, we will be sharing a series of videos on Facebook from Huntington's Disease Association staff.
Each video will see a member of the team talking about their area of the charity and how that area impacts the charity and its users. Once the video has been shared and watched, the member of staff will be answering any questions you have in the comments of the video. Just type your query and we will respond!
Join us for a special #HDAwarenessMonth webinar entitled 'Coping with loss' from trained End of Life Doula, Cathy Lyon. Cathy will be discussing sensitive topics including death. A trigger warning is issued for this webinar, please only register if you feel comfortable facing difficult topics such as this.
During the webinar, Cathy will talk through disease trajectory, dying and what that looks like, loss and bereavement, self-care, resilience and end of life planning. This webinar is for those affected by Huntington's, families, friends, professionals and anyone else who is interested in gaining end-of-life knowledge. Follow this link to register today - https://bit.ly/2Lu9SA7
During awareness month, we are focusing on dealing with loss or change in relation to Huntington’s disease. Finding out that you have the Huntington’s gene can be difficult news to hear and coming to terms with the changes in your life this may bring can be confusing and upsetting.
In this interview, we will talk to Emma Fletcher. Emma is the Head of Girls Football Development at Manchester United, a mother, wife, friend, fundraiser, #HDAwarenessMonth supporter and she has Huntington’s disease. Emma is going to discuss how being diagnosed with a fatal disease has changed her life.
Join our Youth Worker, James, from the Huntington's Disease Association Youth Engagement Service on Thursday, 14 May 2020 for an awareness-raising and informative webinar all about young carers. The webinar will highlight some of the challenges that young carers face and talk through the support options available to them. Young carers, parents, families, friends, neighbours, teachers, employers, medical professionals, everyone is invited! To register for this webinar please click here.
We will be bringing you an in-depth interview with Huntington's care expert, Cathy Lyon. Cathy will discuss behaviour in Huntington's whilst giving tip and hints on how to handle certain behaviours ass based on her expansive experience of Huntington's disease care.
We will be sharing information on our social channels all about what it means to be an older carer and where the difficulties lie when you're 65+ and caring for someone affected by Huntington's disease. We will guide you through our older cares webpages which house advice and information specifically for older carers.
Advice on handling apathy in Huntington's disease. We will create an informative infographic that gives helpful tips and hints on coping with apathy in Huntington's. This is especially relevant during COVID-19 as being stuck indoors can breed apathy in all.
This infographic has now been published, it can be seen here!
We will be sharing a guest article from Huntington's family member, Charlotte Wreford, about Huntington’s disease during COVID-19. Charlotte discusses mental health whilst giving a detailed insight into having a partner who is affected by Huntington’s.
COVID-19 has had a dramatic effect on all of our lives. Social distancing measures are significantly impacting our fundraising efforts and ability to help and care for those affected by Huntington’s disease.
Those who are symptomatic of Huntington's disease are considered some of the most vulnerable in society. The risk of respiratory infection means that they are high-risk and must shield themselves for at least three months.
At the Huntington's Disease Association, we will carry on providing advice and support through our Specialist Advisory Service, informative and educational website content, supportive social channels, welfare grants and much more to anyone affected by Huntington's disease. But, we need your help to continue providing this support.Learn more